Determinants of institutional care at older ages in Finland

Väitöskirjassa selvitettiin ikäihmisten laitoshoitoon siirtymisen todennäköisyyttä ja sen taustoja kansainvälisesti ainutlaatuisen rekisteriaineiston avulla. Selvitettäviä asioita olivat eri sairauksien, sosioekonomisten tekijöiden, puolison olemassaolon ja leskeksi jäämisen yhteys laitoshoitoon siirtymiseen yli 65-vuotiailla suomalaisilla. Tutkimuksessa havaittiin, että dementia, Parkinsonin tauti, aivohalvaus, masennusoireet ja muut mielenterveysongelmat, lonkkamurtuma sekä diabetes lisäsivät ikäihmisten todennäköisyyttä siirtyä laitoshoitoon yli 50 prosentilla, kun muut sairaudet ja sosiodemografiset tekijät oli otettu huomioon. Korkeat tulot vähensivät laitoshoidon todennäköisyyttä, kun taas puutteellinen asuminen (ilman peseytymistiloja tai keskus- tai sähkölämmitystä) sekä erittäin puutteellinen asuminen (ilman lämmintä vettä, vesijohtoa, viemäriä tai vesivessaa) lisäsivät todennäkösyyttä, kun muut sosiodemografiset tekijät, sairaudet ja asuinalue oli huomioitu. Kerrostalon hissittömyys ei ollut yhteydessä laitoshoidon todennäköisyyteen. Todennäköisyys siirtyä laitoshoitoon oli jostain syystä korkeampaa niillä ikäihmisillä, jotka asuivat vuokralla ja matalampaa omakotitalossa asuvilla ja niillä, joilla oli auto. Puolison olemassaolo vähensi ja leskeksi jääminen lisäsi laitoshoidon todennäköisyyttä huomattavasti. Todennäköisyys oli erityisen suuri, yli kolminkertainen, kun puolison kuolemasta oli kulunut enintään kuukausi verrattuna niihin, joiden puoliso oli elossa. Todennäköisyys laski, kun puolison kuolemasta kului aikaa. Miesten ja naisten tulokset olivat samansuuntaisia. Korkeat tulot tai koulutus eivät suojanneet riskiltä joutua laitoshoitoon puolison kuoltua. Puolison kuolema näyttää lisäävän hoidon tarvetta, kun kotona ei ole enää puolisoa tukemassa ja huolehtimassa kodin askareista. Laitoshoidon tarve vähenee, jos ja kun lesket ajan kuluessa oppivat elämään yksin. Toisaalta tutkimustulokset saattavat viitata myös siihen, että kaikkein huonokuntoisimmat lesket, jotka eivät pärjää yksin asuessaan, siirtyvät laitoshoitoon hyvin nopeasti puolison kuoltua. Tutkimuksessa oli mukana yhteensä yli 280 000 yli 65-vuotiasta henkilöä, joiden pitkäaikaiseen laitoshoitoon siirtymistä seurattiin tammikuusta 1998 syyskuuhun 2003. Laitoshoidoksi määriteltiin terveyskeskuksissa, sairaaloissa ja vanhainkodeissa tai vastaavissa yksiköissä tapahtuva pitkäaikainen hoito, joka kesti yli 90 vuorokautta tai oli vahvistettu pitkäaikaishoidon päätöksellä. Tutkimuksessa käytetty aineisto koottiin väestörekistereistä, sosiaali- ja terveydenhuollon rekistereistä ja lääkerekistereistä.

From institutional care to living in South Australia: intercountry adoption

The adoptees' narratives have illustrated the difficulties that they were confronted with when transitioning to a new world. Their remarkable use of self-efficacy enabled them in overcoming deprivation and abuse and leading a better life in Australia. The quality of the post-institutional care was directly related to the adoption outcomes.

Report on alternatives to institutional care : Public Law 99-576, section 235 and House and Senate Veterans Affairs Committees' request of June 20, 1986.

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Professional perspectives on decision making about the long-term care of older people

With the increasing pressure on social and health care resources, professionals have to be more explicit in their decision making regarding the long-term care of older people. This grounded theory study used 19 focus groups and nine semi-structured interviews (99 staff in total) to explore professional perspectives on this decision making. Focus group participants and interviewees comprised care managers, social workers, consultant geriatricians, general medical practitioners, community nurses, home care managers, occupational therapists and hospital discharge support staff. The emerging themes spanned context, clients, families and services. Decisions were often prompted by a crisis, hindering professionals seeking to make a measured assessment. Fear of burglary and assault, and the willingness and availability of family to help were major factors in decisions about living at home. Service availability in terms of public funding for community care, the availability of home care workers and workload pressures on primary care services influenced decision 'thresholds' regarding admission to institutional care. Assessment tools designed to assist decision making about the long-term care of older people need to take into account the critical aspects of individual fears and motivation, family support and the availability of publicly funded services as well as functional and medical needs.

A system lifeworld perspective on dying in long term care settings for older people:Contested states in contested places

In many Western countries, older people live and die in long-term institutional care settings. Habermas's concepts of lifeworld, system and communicative action are drawn upon to illuminate the experience of living and dying in this particular place. It is proposed that dying older adults, their family and care staff occupy different contested states and long term care settings are contested places, located in a wider system. This wider system, mediated through care homes, can colonise the life world experiences of dying individuals. The development of communicative space bridges the lifeworld and system and offers a way for the lifeworld of dying individuals, and those around them to be reintegrated into, and influence the wider system. © 2010 Elsevier Ltd.

Designing for dementia : an assessment of the impact of the physical environment on wayfinding success for residents in long term care settings

It is acknowledged that one of the consequences of the ageing process is cognitive decline, which leads to an increase in the incidence of illnesses such as dementia. This has become ever more relevant due to the projected increase in the ageing demographic. Dementia affects visuo-spatial perception, causing difficulty with wayfinding, even during the early stages of the disease. The literature widely recognises the physical environment’s role in alleviating symptoms of dementia and improving quality of life for residents. It also identifies the lack of available housing options for older people with dementia and consequently the current stock is ill-equipped to provide adequate support.
Recent statistics indicate that 80% of those residing in nursing or residential care homes have some form of dementia or severe memory problems. The shift towards institutional care settings, the need for specialist support and care, places a greater impetus on the need for a person-centred approach to tackle issues related to wayfinding and dementia.
This thesis therefore aims to improve design for dementia in nursing and residential care settings in the context of Northern Ireland. This will be undertaken in order to provide a better understanding of how people with dementia experience the physical environment and to highlight features of the design that assist with wayfinding. Currently there are limited guidelines on design for dementia, meaning that many of these are theoretical, anecdotal and not definitive. Hence a greater verification to address the less recognised design issues is required. This is intended to ultimately improve quality of life, wellbeing, independence and uphold the dignity of people with dementia living in nursing or residential care homes.
The research design uses a mixed methods approach. A thorough preparation and consideration of ethical issues informed the methodology. The various facets were also trialled and piloted to identify any ethical, technological, methodological, data collection and analysis issues. The protocol was then amended to improve or resolve any of the aforementioned issues. Initially a questionnaire based on leading design recommendations was conducted with home managers. Semi-structured interviews were developed from this and conducted with staff and resident’s next of kin. An evidence-based approach was used to design a study which used ethnographic methods, including a wayfinding task. This followed a repeated measures design which would be used to actively engage residents with dementia in the research. Complementary to the wayfinding task, conversational and semi-structured interviews were used to promote dialogue and direct responses with the person with dementia. In addition to this, Space Syntax methodologies were used to examine the physical properties of the architectural layout. This was then cross-examined with interview responses and data from the wayfinding tasks.
A number of plan typologies were identified and were determined as synonymous with decision point types which needed to be made during the walks. The empirical work enabled the synthesis of environmental features which support wayfinding.
Results indicate that particular environmental features are associated with improved performance on the wayfinding tasks. By enhancing design for dementia, through identifying the attributes, challenges with wayfinding may be overcome and the benefits of the physical environment can be seen to promote wellbeing.
The implications of this work mean that the environmental features which have been highlighted from the project can be used to inform guidelines, thus adding to existing knowledge. Future work would involve the dissemination of this information and the potential for it to be made into design standards or regulations which champion design for dementia. These would increase awareness for designers and stakeholders undertaking new projects, extensions or refurbishments.
A person-centred, evidence-based design was emphasised throughout the project which guaranteed an in-depth study. There were limitations due to the available resources, time and funding. Future research would involve testing the identified environmental features within a specific environment to enable measured observation of improvements.

Tradition, Change and Variation : Past and Present Trends in Public Old-age Care

The general aim of this dissertation is to describe and analyse how public old-age care in Sweden has developed and changed during the last century. The study applies a provider perspective on how care has been planned and professionally carried out. A broader social policy perspective, studying old-age care at central/national as well as local/municipal level, is also developed. A special focus is directed at the large local variation in care and services for the elderly. The empirical base is comprised of official documents and other public sources, survey data from interviews with elderly recipients of public old-age care, and official statistics on publicly financed and controlled old-age care and services. Study I addresses the development of old-age care in Sweden during the twentieth century by studying an important occupation in this field – the supervisors and their professional roles, tasks and working conditions. Throughout, the roles of supervisors have followed the prevailing official policy on the proper way to provide care for elderly people in Sweden; from poor relief at the beginning of the 1900s, via a generous level of services in the 1960s and 1970s, to today’s restricted and economy-controlled mode of operation. Study II describes and compares two main forms of public old-age care in Sweden today, home help services and institutional care. The care-load found in home-based care was comparable to and sometimes even larger than in service-homes and other institutions, indicating that large care needs among elderly people in Sweden today can be met in their homes as well as in institutional settings. Studies III and IV analyse the local variation in public old-age care in Sweden. During the last decades there has been an overall decline in home help services. The coverage of home help for elderly people shows large differences between municipalities throughout this period, and the relative variation has increased. The local disparity seems to depend more on historical factors, e.g., previous coverage rates, than on the present municipal situation in levels of need or local economy and politics. In an introductory part the four papers are linked together by an outline of the demographic situation and the social policy model for old-age care in Sweden. Trends that have been apparent over time, e.g. professionalisation and market orientation, are traced and discussed. Conflicts between prevailing ideologies are analysed, in regards to for instance home-based and institution-based care, social and medical culture, and local and central levels of decision-making. ’Welfare municipality’, ‘path dependency’, and ‘decentralisation’ are suggested as a conceptual framework for describing the large and increasing local variations in old-age care. Finally, implications of the four studies with regard to old-age care policy and further research are discussed.

Costs of managing urinary and faecal incontinence in a sub-acute care facility: A "bottom-up" approach

Aims: To measure accurately the direct costs of managing urinary and faecal incontinence in the sub-acute care setting. Materials and Methods: Prospective observational study was undertaken in two sub-acute care units in a metropolitan hospital. A consecutive series of 29 consecutive patients with urinary and/or faecal incontinence, who were in-patients in a geriatric rehabilitation or subacute neurologic unit underwent routine timed voiding protocol, as per usual care. Face-to-face bedside recordings of all incontinence care, with detailed cost analysis, were undertaken. Results: A total of 3,621 occasions of continence care were costed. The median time per 24 hr spent caring for incontinence per patient was 109 min (interquartile range 88-140). Isolated urinary incontinence episodes occurred in 28 patients (96.5%), mixed urinary/faecal incontinence episodes observed in 79.3%, and episodes of pure faecal incontinence were seen in 62%. The median costs of incontinence care in the sub-acute setting was $49AU per 24 hr, the major share ($41) spent on staff wages. The incontinence tasks of toileting assistance, pad changes, bed changes and catheter care were spread evenly across the three 8 hr shifts of duty. Conclusions: As our population demographics include an increasingly greater portion of the elderly, for whom long term institutional care is becoming relatively more scarce, provision of care in the sub-acute unit that may allow rehabilitation and return to home warrants scrutiny. This is the first study that delineates the costs of managing urinary and faecal incontinence in the sub-acute care setting. Such costs are substantial and place a heavy burden upon night-time carets. (C) 2004 Wiley-Liss, Inc.

Saying sorry in the 21st century : public apologies in a digital world

The public apology to the Forgotten Australians in late 2009 was, for many, the culmination of a long campaign for recognition and justice. The groundswell for this apology was built through a series of submissions which documented the systemic institutionalised abuse and neglect experienced by the Forgotten Australians that has resulted, for some, in life-long disadvantage and marginalisation. Interestingly it seems that rather than the official documents being the catalyst for change and prompting this public apology, it was more often the personal stories of the Forgotten Australians that resonated and over time drew out quite a torrent of support from the public leading up to, during and after the public apology, just as had been the case with the ‘Stolen Generation.’ Research suggests (cite) that the ethics of such national apologies only make sense if their personal stories are seen as a collective responsibility of society, and only carry weight if we understand and seek to Nationally address the trauma experienced by such victims. In the case of the Forgotten Australians, the National Library of Australia’s Forgotten Australians and Former Child Migrants Oral History Project and the National Museum’s Inside project demonstrate commitment to the digitisation of the Forgotten Australians’ stories in order to promote a better public understanding of their experiences, and institutionally (and therefore formally) value them with renewed social importance. Our project builds on this work not by making or collecting more stories, but by examining the role of the internet and digital technologies used in the production and dissemination of individuals’ stories that have already been created during the period of time between the tabling of the senate inquiry, Children in Institutional Care (1999 or 2003?) and a formal National apology being delivered in Federal Parliament by PM Kevin Rudd (9 Nov, 2009?). This timeframe also represents the emergent first decade of Internet use by Australians, including the rapid easily accessible digital technologies and social media tools that were at our disposal, along with the promises the technology claimed to offer — that is that more people would benefit from the social connections these technologies allegedly were giving us.

Större frihet - bättre lokalt anpassad service? : Förvaltningsreformer och kommunernas service för utvecklingsstörda 1994-2000

In the beginning of the 1990s the legislation regarding the municipalities and the system of central government transfers were reformed in Finland. This resulted in a move from detailed governmental control to increased municipal autonomy. The purpose of this decentralization was to enable the municipalities to better adapt their administration and service supply to local needs. The aim of this study was to explore the effects of the increased municipal autonomy on the organization of services for people with intellectual disabilities. Did the increased autonomy cause the municipalities to alter their service supply and production and did the services become more adapted to local needs? The data consists of statistical information on service use and production, and also of background data such as demographics, economics and political elections on 452 municipalities in Finland from the years 1994 and 2000. The methods used are cluster analysis, discriminant analysis and factor analysis. The municipalities could be grouped in two categories: those which offered mainly one kind of residential services and others which had more varied mixes of services. The use of institutional care had decreased and municipalities which used institutional care as their primary form of service were mostly very small municipalities in 2000. The situation had changed from 1994, when institutional care was the primary service for municipalities of all sizes. Also the service production had become more differentiated and the municipalities had started using more varied ways of production. More municipalities had started producing their own services and private production had increased as well. Furthermore, the increase in local autonomy had opened up possibilities for local politics to influence both the service selection and methods of production. The most significant motive for changes in the service structure was high unemployment and an increasing share of elderly people in the population, particularly in sparsely populated areas. Municipalities with a low level of resources had made more changes in their service organization while those with more resources had been able to carry on as before. Key words: service structure, service for people with intellectual disabilities, municipalities, contingency theory, New Public Management

Matkalla marginaalista valtavirtaan? : Huumeiden käytön lopettaneiden elämäntapa ja toipuminen

On a journey from marginal to mainstream? The lifestyle and recovery of former drug users This thesis studies the lifestyle and recovery of former users of illicit drugs through their experiences. The study describes the life of people with drug problems both during the time they used drugs regularly and after they stopped the use entirely. The focus is on the development of the lifestyle of 32 persons who no longer use drugs. They may have stopped using drugs independently or with the help of a treatment. In this study, persons who have given up drug use with the help of a psychosocially oriented treatment are called non-medicinally treated former users (n=19) whereas opioid addicts who have stopped using drugs through substitution treatment are referred to as substitution treatment patients (n=13). The research material was gathered from theme interviews. The criteria for the focus group of the study included the following: a) the interviewees had had a serious drug problem in their past; b) they had not used drugs for at least one year prior to the interview; c) they were not in an institutional care at the time of the study. This thesis is basically a lifestyle study in which the aspects of lifestyle are used to describe the everyday life of former drug users. The study reviews the whole spectrum of everyday routines, especially the social interaction and subjective experiences of people. The second concept used in this study is recovery, which is described as a process that starts from the abstinence from substances and adoption of the recovery culture and continues as a comprehensive change of the lifestyle, identity and values of an individual. Disengaging from a drug-oriented lifestyle and connected social network as well as finding an individual frame of reference is a demanding process. Years of drug use have often caused complex health and social disadvantages as well as problems with work, education, livelihood, accommodation and human relationships. The effect of the past on the present arises at all levels. The interviews revealed a recovery culture maintaining the lifestyle as well as an adaptive and optimistic approach to the future among those participating in the study. The study shows that an adequate distance from acute substance use is a precondition for the beginning of the recovery process, yet abstinence in itself tells nothing about the actual recovery. The study describes how some recovering users find a meaning in life easily whereas others have to work actively for their recovery. Detaching oneself from the feeling of adopted abnormality connected with substance addiction forms an important basis for satisfying abstinence. Peer groups support the development of counter-cultures and abstinence or the support is received from the community formed in the substitution treatment clinic.

PERFECT Stroke : PERFormance, Effectiveness, and Costs of treatment episodes in Stroke

Stroke is a major cause of death and disability, incurs significant costs to healthcare systems, and inflicts severe burden to the whole society. Stroke care in Finland has been described in several population-based studies between 1967 and 1998, but not since. In the PERFECT Stroke study presented here, a system for monitoring the Performance, Effectiveness, and Costs of Treatment episodes in Stroke was developed in Finland. Existing nationwide administrative registries were linked at individual patient level with personal identification numbers to depict whole episodes of care, from acute stroke, through rehabilitation, until the patients went home, were admitted to permanent institutional care, or died. For comparisons in time and between providers, patient case-mix was adjusted for. The PERFECT Stroke database includes 104 899 first-ever stroke patients over the years 1999 to 2008, of whom 79% had ischemic stroke (IS), 14% intracerebral hemorrhage (ICH), and 7% subarachnoid hemorrhage (SAH). A 18% decrease in the age and sex adjusted incidence of stroke was observed over the study period, 1.8% improvement annually. All-cause 1-year case-fatality rate improved from 28.6% to 24.6%, or 0.5% annually. The expected median lifetime after stroke increased by 2 years for IS patients, to 7 years and 7 months, and by 1 year for ICH patients, to 4 years 5 months. No change could be seen in median SAH patient survival, >10 years. Stroke prevalence was 82 000, 1.5% of total population of Finland, in 2008. Modern stroke center care was shown to be associated with a decrease in both death and risk of institutional care of stroke patients. Number needed to treat to prevent these poor outcomes at one year from stroke was 32 (95% confidence intervals 26 to 42). Despite improvements over the study period, more than a third of Finnish stroke patients did not have access to stroke center care. The mean first-year healthcare cost of a stroke patient was ~20 000 , and among survivors ~10 000 annually thereafter. Only part of this cost was incurred by stroke, as the same patients cost ~5000 over the year prior to stroke. Total lifetime costs after first-ever stroke were ~85 000 . A total of 1.1 Billion , 7% of all healthcare expenditure, is used in the treatment of stroke patients annually. Despite a rapidly aging population, the number of new stroke patients is decreasing, and the patients are more likely to survive. This is explained in part by stroke center care, which is effective, and should be made available for all stroke patients. It is possible, in a suitable setting with high-quality administrative registries and a common identifier, to avoid the huge workload and associated costs of setting up a conventional stroke registry, and still acquire a fairly comprehensive dataset on stroke care and outcome.

As representações sociais de profissionais de saúde acerca do paciente psiquiátrico: aspectos descritivos e de zona muda

A presença de pacientes crônicos em instituições psiquiátricas tem se constituído como um desafio humano, político e programático para esta área assistencial. Frente a isto, definiu-se como objetivo geral deste estudo analisar a reconstrução sócio-cognitiva do profissional de saúde mental acerca do paciente psiquiátrico crônico, contextualizando com a sua permanência institucional e o processo assistencial. Como objetivos específicos, descrever os conteúdos e a estrutura das representações sociais do paciente psiquiátrico crônico para os profissionais; identificar a existência de conteúdos implícitos nas formações discursivas dos profissionais de saúde referentes ao paciente crônico institucionalizado; e analisar a perspectiva assistencial implementada na atenção a esses indivíduos no contexto institucional a partir das representações sociais do paciente crônico. Trata-se de uma pesquisa qualitativa, desenvolvida com o aporte teórico-metodológico da Teoria das Representações Sociais em sua abordagem estrutural, em dois hospitais colônias localizados na cidade do Rio de Janeiro. Os dados foram coletados através de evocações livres em dois momentos. No primeiro, com 159 profissionais e no segundo utilizou-se a técnica de substituição com 151 profissionais. Os dados gerados foram analisados pelo software EVOC 2003 e organizados pelo quadro de quatro casas. Utilizou-se, ainda, a análise de similitude. Quanto à representação do paciente psiquiátrico, a mesma foi organizada ao redor das dimensões assistencial-institucional (cuidado), imagética (louco) e afetividade positiva (atenção), que se desdobram nos demais quadrantes, com destaque para a primeira e a segunda. A análise de similitude revelou que o léxico cuidado, obteve o maior número de ligações. Quanto à representação do paciente crônico em contexto normativo, a dimensão assistencial-institucional mostrou-se fortemente presente (cuidado, paciência e dependente), seguida da imagética (abandonado) e da de necessidade (carência). No entanto, na análise de similitude, a afetividade positiva (amor) mostra-se central com maior número de ligações de léxicos. Em contextos contra-normativos, a representação revelou-se negativa (louco, não e medo). A análise de similitude demonstrou uma representação estruturada através de uma imagem e de uma afetividade negativas. Conclui-se que os avanços na área de saúde mental, nos últimos 30 anos, não foram capazes de realizar mudanças representacionais sob fenômenos que ancoram em imagens produzidas desde os primórdios da humanidade. Ressalta-se a possível existência de uma zona muda acerca do paciente psiquiátrico crônico.